This father, athlete and inspiration died today at the age of 80. His and his son Rick's story is one of astonishing strength, stamina, patience, dedication and love. The world has lost a great man. Take six minutes to watch.
calvin's story
Showing posts with label inspiration. Show all posts
Showing posts with label inspiration. Show all posts
3.17.2021
7.26.2020
emotional landscape
There are days that are so dark that I wish my son would disappear into the ether, dissolve like a lozenge on my tongue, seep into the earth like so many drops of rain. And yet, I am without a doubt a better person having carried and cared for him all these years, and for that I owe him a debt of gratitude. But sometimes I wonder how long I can keep up with the intensity of care he requires, and I can't imagine others loving him, cuddling him, and responding to him—especially as he grows—in the way he needs to be happy, healthy and to thrive.
Thursday was one of those days—hard on my body, my psyche, my spirit. I got frustrated. I lost my patience. I screamed, once, long and hard and primal. I grieved. I felt a valley of contempt for Calvin as he screeched and writhed and moaned and flailed all day long and into the night in what we finally concluded was probably a ghost of benzodiazepine withdrawal. It's days like these that sink me, if only momentarily, into oceans of blues.
Among others, Calvin is at the root of my dark feelings. Pain and anger. Loss and grief. Frustration, hurt, impatience. Resentment and contempt. Since his birth, I experience these more deeply than ever before. But I embrace and honor them—these most human emotions we are sometimes taught to betray, suppress, abandon—while trying not to wallow. Perhaps they've gained gravity from the chronic grief of losing a child who is still alive: the loss of a boy who, if things hadn't gone wrong, right now would be riding bikes and running around town with friends; the loss of a boy who right now might be writing down his thoughts, might be studying the stars, protesting injustice; the loss of a boy who, in a couple of years, would perhaps be going off to college or exploring parts of the world like his parents had done.
But I am grateful for how this grief over my child informs my world, my thoughts, feelings and notions. Maybe, like befriending and falling in love with people here and abroad— folks of different backgrounds, religions, races, abilities and nations than my own—being Calvin's mother has helped me to better imagine, understand and consider what life might be like for others who struggle with hardship.
Maybe, by being Calvin's mother—getting injured by him, seeing him repeatedly seize, hearing him screech and holler, feeling so helplessly unaware of the source of his misery, watching him barely develop, worrying about his and our future, losing sleep, even having contempt for him—has taught me how to better forgive people who hurt, offend, betray, bully, wrong and deceive. I wager everyone has shit going on in their lives that hinders their ability to cope and to at times really see themselves, their words and actions, and to appreciate that of those around them, even ones they love.
Of course, there are the sunny emotions like joy and love, which live in concert with the virtues of selflessness, empathy, compassion, patience, humility, grace, charity, gratitude, apology and forgiveness. Calvin's purity and innocence inspire me to practice these, at least when I'm not in the thralls of a pity party or having my hair torn out. If only I were as gifted as he at delivering them so unconditionally. Regrettably, I fail, perhaps particularly in the patience department, though I wager my husband would disagree.
And so, upon reflection, it seems the richest, most interesting emotional landscape may not be the most clear, placid and brilliant, but one that has depth and shadows. Maybe it's one of despair juxtaposed with hope, of contentment alongside struggle, of joy straddling sorrow, each one complimenting the other, each one begging to be explored. Maybe the most meaningful days are when a troubled, agitated, impossible boy can melt into my arms, grinning and giggling at my kisses, and wherein we both discover sublime calm, if only for a moment.
Thursday was one of those days—hard on my body, my psyche, my spirit. I got frustrated. I lost my patience. I screamed, once, long and hard and primal. I grieved. I felt a valley of contempt for Calvin as he screeched and writhed and moaned and flailed all day long and into the night in what we finally concluded was probably a ghost of benzodiazepine withdrawal. It's days like these that sink me, if only momentarily, into oceans of blues.
Among others, Calvin is at the root of my dark feelings. Pain and anger. Loss and grief. Frustration, hurt, impatience. Resentment and contempt. Since his birth, I experience these more deeply than ever before. But I embrace and honor them—these most human emotions we are sometimes taught to betray, suppress, abandon—while trying not to wallow. Perhaps they've gained gravity from the chronic grief of losing a child who is still alive: the loss of a boy who, if things hadn't gone wrong, right now would be riding bikes and running around town with friends; the loss of a boy who right now might be writing down his thoughts, might be studying the stars, protesting injustice; the loss of a boy who, in a couple of years, would perhaps be going off to college or exploring parts of the world like his parents had done.
But I am grateful for how this grief over my child informs my world, my thoughts, feelings and notions. Maybe, like befriending and falling in love with people here and abroad— folks of different backgrounds, religions, races, abilities and nations than my own—being Calvin's mother has helped me to better imagine, understand and consider what life might be like for others who struggle with hardship.
Maybe, by being Calvin's mother—getting injured by him, seeing him repeatedly seize, hearing him screech and holler, feeling so helplessly unaware of the source of his misery, watching him barely develop, worrying about his and our future, losing sleep, even having contempt for him—has taught me how to better forgive people who hurt, offend, betray, bully, wrong and deceive. I wager everyone has shit going on in their lives that hinders their ability to cope and to at times really see themselves, their words and actions, and to appreciate that of those around them, even ones they love.
Of course, there are the sunny emotions like joy and love, which live in concert with the virtues of selflessness, empathy, compassion, patience, humility, grace, charity, gratitude, apology and forgiveness. Calvin's purity and innocence inspire me to practice these, at least when I'm not in the thralls of a pity party or having my hair torn out. If only I were as gifted as he at delivering them so unconditionally. Regrettably, I fail, perhaps particularly in the patience department, though I wager my husband would disagree.
And so, upon reflection, it seems the richest, most interesting emotional landscape may not be the most clear, placid and brilliant, but one that has depth and shadows. Maybe it's one of despair juxtaposed with hope, of contentment alongside struggle, of joy straddling sorrow, each one complimenting the other, each one begging to be explored. Maybe the most meaningful days are when a troubled, agitated, impossible boy can melt into my arms, grinning and giggling at my kisses, and wherein we both discover sublime calm, if only for a moment.
2.06.2020
ridicule
When I attended elementary school in the late sixties and early seventies, children like my son Calvin were sequestered to a separate cinder block building across the parking lot. They rode the short bus. The rest of us kids rarely caught sight of them. Some students called them all the names you'd imagine. Today, my son spends most of his time in his high school's Life Skills (special ed) classroom at the end of the hall. He is seen in the corridors and cafeteria, though is understood by few. In part because he is nonverbal, most of his typical peers and their teachers cannot grasp how complex of a child he is. In this busy world, perhaps they haven't the time or inclination for true understanding. I wonder sometimes what disparaging remarks some students have made behind his back. Though I imagine most of his classmates are kind, no doubt there are a few who whisper insults and slurs, mocking his disability like a certain crude official who somehow got elected.
In what seems like a lifetime ago, last Sunday I tuned into part of the Super Bowl, watching first to see if cameras would capture any Kansas City Chiefs fans mocking the Native Americans whom their team is so regrettably and ignorantly named for. It's astounding that Indigenous people's caricatures are still being used as mascots, their cultures grotesquely stereotyped and dishonored in manners resembling blackface, as if the pillage and pilfering of their villages and land, and the rape, kidnapping and slaughter of their people wasn't enough. And though Native people publicly take offense at these mascots, righteously expressing their disapproval, Whites dig in and stand their ground, insisting the opposite is true, clinging by threads to their disrespectful fetishes. Although I saw no cameras panning across White faces swathed in paint and feathers, when I heard the crowd parody a Native chant, I cringed.
At halftime, Jennifer Lopez and Shakira electrified the field, singing and dancing—indeed celebrating women—surrounded by an army of dark-haired sisters in regalia, their bodies gorgeous and prancing to Latin American rhythms. Clad in sexy sequins and leather getups, they sang in English and Spanish, embraced a feathery American and Puerto Rican flag, parading their talents, strength and stamina. An all-female string section worked their bows in unison. Smiling widely, I got teary seeing so many women own center stage and make such powerful political statements. They celebrated Goddess and matriarchy, Puerto Rican and other Latin Americans and their music, with nods to various cultures peppered into their mastery.
In an instant, however, some folks denounced the show as disgusting, crude and unfit for their children. What I saw was altogether different, even as I watched it a second time. I saw formidable women take agency, women who no doubt had total autonomy over their production. I saw girls singing, "Let's get loud! Ain't nobody gotta tell you what you gotta do!" I saw gifted women kicking (and shaking) ass, as if to say "kiss mine!" to the intolerant officials who disparage Americans of Color, block the entry of Muslims and Africans, denigrate and separate refugees from their families, putting their children in cages.
Those who scorned the female performers were likely the same ones watching a field full of mostly-Black athletes like gladiators bash each-other's heads in, risking traumatic brain and other injuries. Throngs of White onlookers—coaches, managers, fans—stood or sat in the safety of the sidelines, bleachers and VIP boxes, drinking beer, chewing gum, cursing and applauding each vicious sack. Boys and girls were also watching the carnage, same as they do in video games, television, and movies.
The condemnation of the female performers reminded me of contemptuous folks who quietly chastise overweight people for wearing bikinis at the beach or pool. I was reminded of the folks who champion dress codes for girls for the so-called sake of preserving boys' precious educations. I was reminded how women and girls are told, tacitly or not, to keep our knees together, to behave, to be ladylike, to smile, to consent, to be quiet, modest, obedient, sedate, yielding, abiding, pretty and chaste rather than fierce, assertive, outspoken, strong, dominant, irreverent. Lastly, I considered how it might please some people if they never had to see kids and adults like my son Calvin drool and limp and writhe in public.
I know what it is to be ridiculed and shamed. As a rowdy tomboy, I was told to wear dresses and skirts. I was scorned for my stringy hair and inflamed acne, even by adults. I've been shamed for how I've looked (too boyish or too sexy), how I've acted (too serious or oversensitive), the friends I've kept and keep, whom I've loved, how I've dressed, and what I eat for breakfast or lunch. I've no doubt but that if Calvin were slightly more able to be independent and mainstreamed, he'd be at times bullied, ridiculed, shunned and shamed for how he looks, and sounds and walks and eats. Likewise, I wonder if the Angolan and Congolese refugees at his school are subject to similar abuse and chastisement by a handful of the most ignorant students and adults.
My best guess is that we've all been mocked, shamed and ridiculed, and have likewise been guilty of committing similar offenses. I too often fail miserably. What are the drivers of these kinds of castigations? I wager fear, ignorance and conceit. My boy Calvin is incapable of feeling these. As such, though he's understood by few, and cannot read or write or feed himself or speak, he is quite the teacher, a rare and pure reminder of how it's best to be.
In what seems like a lifetime ago, last Sunday I tuned into part of the Super Bowl, watching first to see if cameras would capture any Kansas City Chiefs fans mocking the Native Americans whom their team is so regrettably and ignorantly named for. It's astounding that Indigenous people's caricatures are still being used as mascots, their cultures grotesquely stereotyped and dishonored in manners resembling blackface, as if the pillage and pilfering of their villages and land, and the rape, kidnapping and slaughter of their people wasn't enough. And though Native people publicly take offense at these mascots, righteously expressing their disapproval, Whites dig in and stand their ground, insisting the opposite is true, clinging by threads to their disrespectful fetishes. Although I saw no cameras panning across White faces swathed in paint and feathers, when I heard the crowd parody a Native chant, I cringed.
At halftime, Jennifer Lopez and Shakira electrified the field, singing and dancing—indeed celebrating women—surrounded by an army of dark-haired sisters in regalia, their bodies gorgeous and prancing to Latin American rhythms. Clad in sexy sequins and leather getups, they sang in English and Spanish, embraced a feathery American and Puerto Rican flag, parading their talents, strength and stamina. An all-female string section worked their bows in unison. Smiling widely, I got teary seeing so many women own center stage and make such powerful political statements. They celebrated Goddess and matriarchy, Puerto Rican and other Latin Americans and their music, with nods to various cultures peppered into their mastery.
In an instant, however, some folks denounced the show as disgusting, crude and unfit for their children. What I saw was altogether different, even as I watched it a second time. I saw formidable women take agency, women who no doubt had total autonomy over their production. I saw girls singing, "Let's get loud! Ain't nobody gotta tell you what you gotta do!" I saw gifted women kicking (and shaking) ass, as if to say "kiss mine!" to the intolerant officials who disparage Americans of Color, block the entry of Muslims and Africans, denigrate and separate refugees from their families, putting their children in cages.
Those who scorned the female performers were likely the same ones watching a field full of mostly-Black athletes like gladiators bash each-other's heads in, risking traumatic brain and other injuries. Throngs of White onlookers—coaches, managers, fans—stood or sat in the safety of the sidelines, bleachers and VIP boxes, drinking beer, chewing gum, cursing and applauding each vicious sack. Boys and girls were also watching the carnage, same as they do in video games, television, and movies.
The condemnation of the female performers reminded me of contemptuous folks who quietly chastise overweight people for wearing bikinis at the beach or pool. I was reminded of the folks who champion dress codes for girls for the so-called sake of preserving boys' precious educations. I was reminded how women and girls are told, tacitly or not, to keep our knees together, to behave, to be ladylike, to smile, to consent, to be quiet, modest, obedient, sedate, yielding, abiding, pretty and chaste rather than fierce, assertive, outspoken, strong, dominant, irreverent. Lastly, I considered how it might please some people if they never had to see kids and adults like my son Calvin drool and limp and writhe in public.
I know what it is to be ridiculed and shamed. As a rowdy tomboy, I was told to wear dresses and skirts. I was scorned for my stringy hair and inflamed acne, even by adults. I've been shamed for how I've looked (too boyish or too sexy), how I've acted (too serious or oversensitive), the friends I've kept and keep, whom I've loved, how I've dressed, and what I eat for breakfast or lunch. I've no doubt but that if Calvin were slightly more able to be independent and mainstreamed, he'd be at times bullied, ridiculed, shunned and shamed for how he looks, and sounds and walks and eats. Likewise, I wonder if the Angolan and Congolese refugees at his school are subject to similar abuse and chastisement by a handful of the most ignorant students and adults.
My best guess is that we've all been mocked, shamed and ridiculed, and have likewise been guilty of committing similar offenses. I too often fail miserably. What are the drivers of these kinds of castigations? I wager fear, ignorance and conceit. My boy Calvin is incapable of feeling these. As such, though he's understood by few, and cannot read or write or feed himself or speak, he is quite the teacher, a rare and pure reminder of how it's best to be.
8.13.2019
whatever you are, be a good one
Chronically sleep deprived—in general and of late—and despairing of life's various disappointments, including my son's recent spate of focal seizures, I opened a book that Calvin's school had awarded him for being a so-called honor student.
The small book, Whatever You Are, Be a Good One: 100 inspirational quotations hand lettered by Lisa Congdon, proved therapeutic as I flipped through its pages. Below are some quotes which struck me most, particularly considering the state of things in the nation and in my mind, plus other smaller, albeit troubling, goings-on. I hope you like these and find meaning and solace in their wisdom, as did I. If so, meditate on them:
Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.
—Henry James
Life appears to me too short to be spent nursing animosity or registering wrongs.
—Charlotte Bronte
Unselfish and noble acts are the most radiant epochs in the biography of souls.
—David Thomas
Nothing in life is to be feared, it is only to be understood.
—Marie Curie
Be curious, not judgmental.
—Walt Whitman
I hold this to be the highest task for a bond between two people: that each protects the solitude of the other.
—Ranier Maria Rilke
Nothing contributes so much to tranquilize the mind as a steady purpose.
—Mary Shelley
I feel safe in the midst of my enemies, for the truth is all powerful and will prevail.
—Sjourner Truth
Hope smiles from the threshold of the year to to come, whispering, "it will be happier ..."
—Alfred Tennyson
 |
| Photo by Michael Kolster |
1.23.2017
larger than myself
It was an agonizing decision, but after resolving not to fly to DC for the Women’s March on Saturday, I finally felt at peace. Many dear friends and some amazing strangers, through their kind messages and words of support, helped me come to my conclusion. The morning of the march, however, I wept. I felt trapped in this little town, one which I haven’t been able to escape from for over two years. I mourned the loss of the chance to be a part of something larger than myself. Michael held me, which always makes me feel better. A few hours later, we packed up and drove south to Portland.
We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.
Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.
Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:
Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.
On social media the past week I fielded some questions about the marches. The queries, verbatim, were:
What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?
I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.
Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.
We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.
Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.
Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:
my rights are not up for grabs
respect existence or expect resistance
feminism is the radical notion that women are equal to men
i’m not a sign guy, but geez
leave it to the beavers
1968 is Calling. Don’t Answer
I would not want to be the guy who pissed off all these women
We are the 51%
Make America think again
Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.
On social media the past week I fielded some questions about the marches. The queries, verbatim, were:
What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?
I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.
Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.
 |
| Photo by Connie Chiang |
5.09.2014
blue ribbon boy
My core competitive nature makes me very proud of Calvin for winning a first place ribbon (for the second year in a row, mind you) in the assisted-walk event at our regional Special Olympics. By the looks on their faces—watch lane 5—I think he and Mary had fun.
7.31.2013
spreading the light
There are only two ways of spreading the light—to be the candle or the mirror that reflects it.
—Edith Wharton
 |
| photo by Ann Anderson |
7.13.2013
deb
Deb: Dedicated, Excellent. Bad-ass doc. Deb.
Deb is my son’s pediatrician. She’s been with him—with us—since Calvin was three weeks old, since we transferred from Maine Medical Center, where he was born, to our local hospital shortly after he was released from the neonatal intensive care unit. We took up residence in the labor and delivery ward for nearly four more weeks while Calvin practiced nursing.
Deb: Dogged. Encouraging. Brilliant. Deb.
Nearly every day while in the hospital, it seemed, Deb came to check on us in the morning. Usually, I had very low spirits having tried nursing Calvin with little luck since he was born six weeks early and having not yet developed the suck-swallow reflex. The nurses assigned to him would, every feeding time, weigh him on a sensitive gram scale before I nursed and then again, after, to determine how many grams of my milk he’d ingested. Then he’d get the remainder of his caloric requirement through a nasogastric tube attached to an inverted syringe full of my pumped breast milk. Deb was our cheerleader, and as such she coached us and assured us that Calvin would one day get it, would one day be going home. Without her I’d have fallen much earlier into the depths of despair because of my child that was failing to thrive. Without her I’d have had little hope.
Deb: Determined. Empathetic. Blue-ribbon. Deb.
But I did have hope because she gave it to me, and when Calvin was seven weeks old and barely six pounds, we brought him home. Since then Deb has made us feel as if Calvin is her only patient. I can’t quite wrap my head around the amount of time and effort she spends at work and then at home scouring stacks of books, medical journals and the Internet beefing up on my son’s conditions and afflictions and how to best treat them. She continually fields my copious emails, squeezes us in early for urgent appointments, speaks to us at length on the telephone long after her last patient has gone home, hugs us, at times cries with us, empathizes with us and has even made house calls on more than one occasion.
Deb: Down to earth. Extraordinary. Benevolent. Deb.
It’s difficult, if not impossible, to imagine what caring for Calvin would be like if it were not for Deb. She’s a rock. She’s Superwoman. She’s a caring individual and an indefatigable advocate for my son and my family. She’s the best pediatrician I can imagine, and though we don’t hang out together, I feel honored to call her my friend.
Deb. This one's for you.
Deb is my son’s pediatrician. She’s been with him—with us—since Calvin was three weeks old, since we transferred from Maine Medical Center, where he was born, to our local hospital shortly after he was released from the neonatal intensive care unit. We took up residence in the labor and delivery ward for nearly four more weeks while Calvin practiced nursing.
Deb: Dogged. Encouraging. Brilliant. Deb.
Nearly every day while in the hospital, it seemed, Deb came to check on us in the morning. Usually, I had very low spirits having tried nursing Calvin with little luck since he was born six weeks early and having not yet developed the suck-swallow reflex. The nurses assigned to him would, every feeding time, weigh him on a sensitive gram scale before I nursed and then again, after, to determine how many grams of my milk he’d ingested. Then he’d get the remainder of his caloric requirement through a nasogastric tube attached to an inverted syringe full of my pumped breast milk. Deb was our cheerleader, and as such she coached us and assured us that Calvin would one day get it, would one day be going home. Without her I’d have fallen much earlier into the depths of despair because of my child that was failing to thrive. Without her I’d have had little hope.
Deb: Determined. Empathetic. Blue-ribbon. Deb.
But I did have hope because she gave it to me, and when Calvin was seven weeks old and barely six pounds, we brought him home. Since then Deb has made us feel as if Calvin is her only patient. I can’t quite wrap my head around the amount of time and effort she spends at work and then at home scouring stacks of books, medical journals and the Internet beefing up on my son’s conditions and afflictions and how to best treat them. She continually fields my copious emails, squeezes us in early for urgent appointments, speaks to us at length on the telephone long after her last patient has gone home, hugs us, at times cries with us, empathizes with us and has even made house calls on more than one occasion.
Deb: Down to earth. Extraordinary. Benevolent. Deb.
It’s difficult, if not impossible, to imagine what caring for Calvin would be like if it were not for Deb. She’s a rock. She’s Superwoman. She’s a caring individual and an indefatigable advocate for my son and my family. She’s the best pediatrician I can imagine, and though we don’t hang out together, I feel honored to call her my friend.
Deb. This one's for you.
 |
| photo by Michael Kolster |
6.16.2013
i miss you dad
I miss you Dad. It’s been a long time since I last saw your face,
laughed with you, held your strong hand, gave you a hug as you hugged
me back lifting my feet off the ground. I miss our wrestling matches. I
miss helping you tend to your amazing garden. I miss tossing the ball
with you. I miss watching you officiate at swim meets, so proud that the
tall handsome starter in white was you. I miss eating your soft-boiled
eggs with butter and salt watching you lean your hip against the kitchen
counter, bowl and spoon in hand, reading the morning paper.
I miss you Dad. I used to love listening to your litany of jokes just to watch you crack up—crinkled up nose, squinting eyes filling with tears of joy and amusement, wide jumping shoulders, unmistakable hoarse cackle. I miss pouring you more wine when you weren’t looking, just to take your sometimes somber edge off. You liked relaxing. You didn’t do it enough.
Dad, you went away far too early, in the prime of your retirement, finally resting after thirty years of what became monotony at a desk job on a florescent-lit floor with hundreds of busy clones in crisp white shirts and ties, the token female always the secretary. You should have had many, many more years ahead of you the way you kept your body and mind in such outstanding shape. No man your age—nor half your age—could hold a candle to you. But that insidious cancer, your body’s own cells attacking, painfully eroding your very marrow, chemotherapy sickening you to the core.
I’ll always remember the pillar which was you. I feel we are so alike and am thankful that your strength and stamina runs through me like a steely rod. It’s in great part because of you that I can withstand so much of what life throws my way.
I miss you, Dad. I wish you could see us now. I can imagine you cuddling with Calvin, tickling him and kissing him and bouncing him hilariously on your knee like you did with me. He would crack up the same way we used to. You are part of him. The two of you wouldn’t need words, just time, just togetherness.
I miss you, Dad. I think of you every day.
I miss you Dad. I used to love listening to your litany of jokes just to watch you crack up—crinkled up nose, squinting eyes filling with tears of joy and amusement, wide jumping shoulders, unmistakable hoarse cackle. I miss pouring you more wine when you weren’t looking, just to take your sometimes somber edge off. You liked relaxing. You didn’t do it enough.
Dad, you went away far too early, in the prime of your retirement, finally resting after thirty years of what became monotony at a desk job on a florescent-lit floor with hundreds of busy clones in crisp white shirts and ties, the token female always the secretary. You should have had many, many more years ahead of you the way you kept your body and mind in such outstanding shape. No man your age—nor half your age—could hold a candle to you. But that insidious cancer, your body’s own cells attacking, painfully eroding your very marrow, chemotherapy sickening you to the core.
I’ll always remember the pillar which was you. I feel we are so alike and am thankful that your strength and stamina runs through me like a steely rod. It’s in great part because of you that I can withstand so much of what life throws my way.
I miss you, Dad. I wish you could see us now. I can imagine you cuddling with Calvin, tickling him and kissing him and bouncing him hilariously on your knee like you did with me. He would crack up the same way we used to. You are part of him. The two of you wouldn’t need words, just time, just togetherness.
I miss you, Dad. I think of you every day.
Originally published 06.19.11.
 |
| Donald Murray Shake, February 20th 1925 - January 16, 1996 |
5.08.2013
special olympics
At today's Midcoast Maine Special Olympics, Calvin won his heat in the 10 meter assisted walk with the help of his totally awesome one-on-one, Mary, and his very competitive mother.
 |
| photos by Ann Anderson |
4.04.2013
thank you dr. king
An individual has not started living until he can
rise above the narrow confines of his individualistic concerns to the
broader concerns of all humanity.
I believe that unarmed truth and unconditional love will have the final word in reality. This is why right temporarily defeated is stronger than evil triumphant.
—Reverend Dr. Martin Luther King, Jr.
Forty-five years ago today civil rights leader Dr. Martin Luther
King, Jr. was killed by an assassin’s bullet in Memphis. His message continues to resonate for all, but particularly for those who continue to be discriminated against, maligned, neglected, hated and/or suppressed: women, people of color, gay men, lesbians, bisexual people, transgender individuals, immigrants, veterans, homeless people, the poor and the disabled. Thank you Dr. King for your ongoing contribution to the betterment of society.
 |
| Image from the Library of Congress |
3.15.2013
friday faves - pain and inspiration
My brother Scott is a world-class Master’s swimmer. He’s in his early
fifties still swimming times nearly as good—if not better in some
cases—as he did in College. Scott has competed in countless Master’s
Nationals and over the
years he’s broken a few world records in his age group.
Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred and seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.
Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.
At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and weeping. Scott described the event, my father not having been able to attend the swim meet. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, but for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.
My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men, through example rather than advice, have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin. I only wish I could share that same magnificent influence with my own son ... and with others.
Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred and seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.
Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.
At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and weeping. Scott described the event, my father not having been able to attend the swim meet. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, but for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.
My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men, through example rather than advice, have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin. I only wish I could share that same magnificent influence with my own son ... and with others.
Originally published 05.02.11.
 |
2.26.2013
big power
"When you're small, you gotta fix what you can."
—Hushpuppy, from Beasts of the Southern Wild
2.04.2013
play-by-play
In lieu of watching last night's Super Bowl, its half-time show and all of the ridiculously sexist and violent commercials, I waged my own campaign on Facebook. Here's the goofy play-by-play. If you missed the chance, pick your favorite meme by clicking that link and donate now:
Thanks to all of you who helped make sure that my Super Bowl campaign to raise funds for epilepsy research wasn't a complete shutout. BUT THE GAME IS NOT OVER. Donate to CURE epilepsy NOW! http://www.calvinscure.com
2:29 pm
About to toss your money into that Super Bowl pool (which is fun but inconsequential)? Consider donating it to CURE epilepsy instead, which could change the world for millions of people and their families. http://www.calvinscure.com/
5:15 pm
At Super Bowl halftime, take a time-out to pledge a gift of hope. Donate to CURE epilepsy at: http://www.calvinscure.com/
6:40 pm
okay dudes and dudettes, how about this: when your team scores, score one for calvin and give to CURE epilepsy: http://www.calvinscure.com/ it's as easy as sitting on your couch eating nachos and drinking a bud.
6:58 pm
boycott those stupid, sexist, violent super bowl commercials. time out and donate to epilepsy awareness instead! http://www.calvinscure.com/
7:54 pm
in honor of all of those football players that have—and will suffer—head injuries and develop epilepsy, donate to epilepsy research: http://www.calvinscure.com/
8:17 pm
okay, if you i bug the hell out of you, donate to epilepsy research now at: http://www.calvinscure.com/
8:29 pm
halftime show results: beyonce: 111 million. calvin: ZERO. it's not too late. donate now to CURE epilepsy http://www.calvinscure.com/
8:42 pm
touchdown, smuchdown. CURE epilepsy instead: http://www.calvinscure.com/
8:44 pm
beyonce has got the moves but did you know that my middle name is "sure can"? if i ever made you laugh, give to cure epilepsy: http://www.calvinscure.com/
8:47 pm
ok guys and gals, seems like now is your chance. must be some sort of SUPER SNAFU. lights out. give to epilepsy research NOW: http://www.calvinscure.com/
8:48 pm
TOUCHDOWN! thank you cassie jones! first donation of the night. YESSSSSS! http://www.calvinscure.com/
8:53 pm
TOUCHDOWN AGAIN! thank you Jean Erickson! you are on a winning team, girl. beyonce has nothing on you! any more takers? donate to CURE epilepsy: http://www.calvinscure.com/
8:58 pm
and coming up from behind, beyonce 111 million, calvin 6! thank you Pam Turner, Mark Wethli and Ron Hunt. you are all most valuable players in my book. anyone else brave enough to join the team? http://www.calvinscure.com/
9:01 pm
i'm
not watching the super bowl, but i think the lights are still out. who will
peel their butts off of the bench (couch) and donate now to CURE epilepsy? http://www.calvinscure.com/
9:02 pm
Flynn Jebb, another chick that kicks some super bowl ass! please join her in donating to CURE epilepsy: http://www.calvinscure.com/
9:09 pm
okay, time out and time for bed. please SELF MOTIVATE and GIVE TO EPILEPSY RESEARCH NOW! http://www.calvinscure.com/ i know you can do it!
Thanks to all of you who helped make sure that my Super Bowl campaign to raise funds for epilepsy research wasn't a complete shutout. BUT THE GAME IS NOT OVER. Donate to CURE epilepsy NOW! http://www.calvinscure.com
11.29.2012
out into the real world
I entered the real world again yesterday after a two-hour bus ride to Boston. First on my agenda was to get a shine on my scuffed boots so they’d look nice enough to wear later with my black silk dress. His name was Edward, and as he polished, brushed and buffed my boots amongst the hubbub of Boston's South Station we talked about Lewiston, Maine, friends, children, grandchildren and epilepsy. Sorrow crept over his face when I told him about Calvin, who can’t talk, can’t walk by himself and still wears diapers though he is almost nine years old. I explained that all that didn’t matter compared with the living nightmare of seizures, drugs and their side effects. He said with sympathy, perhaps even empathy, “I know how ‘tis,” and I understood him to mean he knew the pains that come with parenthood. I stepped down off the leather bench, shook his hand and told him I’d be back next time with a different pair of boots for him to shine. He smiled and waved.
In the subway, two Berkeley School of Music students played fiddles with the deft and dexterity that belied their tussled hair, skinny jeans and worn-out canvas sneakers. I tossed what change I had into their open case.
At Harvard Square I ambled down the streets, cold hands stuffed into my pockets, an aching shoulder from the weight of one heavy bag. It felt good to be in the “mix” again—people of all different colors and walks of life. I snuck into a little Italian deli to purchase a split of Champagne for my hosts, Susan and David Axelrod, whose daughter Lauren has epilepsy. To show my thanks I’d have it delivered to their room in the hotel. Then I resumed my hunt for a cup of coffee and a piece of cheesecake, which I never found, so I settled on a designer cupcake that was even too sweet for me. I bought an extra one that I gifted to a homeless man standing on the sidewalk holding a bent cardboard sign. As I approached I met his friendly eyes and said, “I got this just for you,” and he gave me a big, warm scruffy smile. “It’s very sweet,” I cautioned, and he told me that was just what he needed.
For the first time in a long time I felt vigorously alive. I breathed deeply the cold air, closed my eyes to drown myself in the sounds and smells of the city, a place where one can truly embrace humanity with all of its blemishes, shortcomings, wonder, generosity, diversity. In the twilight I exhaled with a satisfied sigh and made my way along the river to the hotel.
Last night at the CURE epilepsy benefit at Fenway Park—the reason I’d come to Boston—I found myself in an a diametrically opposed circumstance from my afternoon walking the streets. I stood elbow to elbow with hundreds of donors. They each payed $1000 for a seat at a table dining on tuna tartar, crispy wonton and the biggest portion of filet mignon I’ve ever seen resting on a delicious bed of sautéed spinach and scalloped turnips, all cooked to perfection. At the cocktail reception I hugged my host and friend Susan and later squeaked through the crowd to introduce myself to her husband, David. “Can I hug you?” I then asked, and he kindly obliged before holding my hand and telling me he was an avid reader of my blog. In a soft, round voice he went on to say how he admired my style of writing. I blushed. At that moment, Senator-elect Elizabeth Warren appeared and David introduced us. In my nervousness I called her Margaret [my default position because of Margaret Warren from my beloved PBS News Hour (later my husband reminded me that her name is Margaret Warner, so I am totally messed up.)] After we shook hands I unabashedly gave her my card, the one with the photo of Calvin and I on one side, the blog address on the other. Upon hearing about Calvin, Elizabeth became animated—impassioned—about the need for epilepsy research and how much more must be done. I nodded and smiled in great agreement, congratulated her on her recent win, said so long to them both then gently slid away through the handsome throng of dark suits and little black dresses.
And I made some other new friends: Leanne, a mother of a 22 year old son with severe epilepsy that doesn't respond to medication, her BFF Tammy who came along for support, my dinner companions Abby, Stephanie, Kim, Jackie, Ernie, Cathleen and Wendy, and two handsome young men who I didn’t get the chance to speak with, sons of the event co-hosts, Anne Finucane & Mike Barnicle whose daughter, Julia, has epilepsy.
A highlight of the event—and there were many—was a speech made by Carol Fulp, a beautiful, brilliant, successful woman with epilepsy who lived with it for fifty years before telling anyone because of its deeply rooted stigma. Her speech made my skin tingle with love and admiration for a person facing much adversity in life, not only as an African American woman, but one bearing—then overcoming—the secret burden of her epilepsy.
I closed the night with a few photos, some good laughs, several heart-felt hugs with Calvin’s neurologist, Elizabeth Thiele, who I absolutely adore, more hugs for Susan and for David then off with my new homies, Leanne and Tammy, whose driver Georgie took us to my hotel for a nightcap. I closed my eyes around midnight, just after an excellent segment of Charlie Rose interviewing Andrew Solomon about his new book Far From the Tree followed by a poignant discussion about racism and mass incarceration in the United States. Must. Stay. Awake.
What I said to David Axelrod is true, I don't get out much. But last night brought into sharp focus what my husband tells me, that getting out into the real world is something I most definitely need to do more of. And with any luck, I will.
In the subway, two Berkeley School of Music students played fiddles with the deft and dexterity that belied their tussled hair, skinny jeans and worn-out canvas sneakers. I tossed what change I had into their open case.
At Harvard Square I ambled down the streets, cold hands stuffed into my pockets, an aching shoulder from the weight of one heavy bag. It felt good to be in the “mix” again—people of all different colors and walks of life. I snuck into a little Italian deli to purchase a split of Champagne for my hosts, Susan and David Axelrod, whose daughter Lauren has epilepsy. To show my thanks I’d have it delivered to their room in the hotel. Then I resumed my hunt for a cup of coffee and a piece of cheesecake, which I never found, so I settled on a designer cupcake that was even too sweet for me. I bought an extra one that I gifted to a homeless man standing on the sidewalk holding a bent cardboard sign. As I approached I met his friendly eyes and said, “I got this just for you,” and he gave me a big, warm scruffy smile. “It’s very sweet,” I cautioned, and he told me that was just what he needed.
For the first time in a long time I felt vigorously alive. I breathed deeply the cold air, closed my eyes to drown myself in the sounds and smells of the city, a place where one can truly embrace humanity with all of its blemishes, shortcomings, wonder, generosity, diversity. In the twilight I exhaled with a satisfied sigh and made my way along the river to the hotel.
Last night at the CURE epilepsy benefit at Fenway Park—the reason I’d come to Boston—I found myself in an a diametrically opposed circumstance from my afternoon walking the streets. I stood elbow to elbow with hundreds of donors. They each payed $1000 for a seat at a table dining on tuna tartar, crispy wonton and the biggest portion of filet mignon I’ve ever seen resting on a delicious bed of sautéed spinach and scalloped turnips, all cooked to perfection. At the cocktail reception I hugged my host and friend Susan and later squeaked through the crowd to introduce myself to her husband, David. “Can I hug you?” I then asked, and he kindly obliged before holding my hand and telling me he was an avid reader of my blog. In a soft, round voice he went on to say how he admired my style of writing. I blushed. At that moment, Senator-elect Elizabeth Warren appeared and David introduced us. In my nervousness I called her Margaret [my default position because of Margaret Warren from my beloved PBS News Hour (later my husband reminded me that her name is Margaret Warner, so I am totally messed up.)] After we shook hands I unabashedly gave her my card, the one with the photo of Calvin and I on one side, the blog address on the other. Upon hearing about Calvin, Elizabeth became animated—impassioned—about the need for epilepsy research and how much more must be done. I nodded and smiled in great agreement, congratulated her on her recent win, said so long to them both then gently slid away through the handsome throng of dark suits and little black dresses.
And I made some other new friends: Leanne, a mother of a 22 year old son with severe epilepsy that doesn't respond to medication, her BFF Tammy who came along for support, my dinner companions Abby, Stephanie, Kim, Jackie, Ernie, Cathleen and Wendy, and two handsome young men who I didn’t get the chance to speak with, sons of the event co-hosts, Anne Finucane & Mike Barnicle whose daughter, Julia, has epilepsy.
A highlight of the event—and there were many—was a speech made by Carol Fulp, a beautiful, brilliant, successful woman with epilepsy who lived with it for fifty years before telling anyone because of its deeply rooted stigma. Her speech made my skin tingle with love and admiration for a person facing much adversity in life, not only as an African American woman, but one bearing—then overcoming—the secret burden of her epilepsy.
I closed the night with a few photos, some good laughs, several heart-felt hugs with Calvin’s neurologist, Elizabeth Thiele, who I absolutely adore, more hugs for Susan and for David then off with my new homies, Leanne and Tammy, whose driver Georgie took us to my hotel for a nightcap. I closed my eyes around midnight, just after an excellent segment of Charlie Rose interviewing Andrew Solomon about his new book Far From the Tree followed by a poignant discussion about racism and mass incarceration in the United States. Must. Stay. Awake.
What I said to David Axelrod is true, I don't get out much. But last night brought into sharp focus what my husband tells me, that getting out into the real world is something I most definitely need to do more of. And with any luck, I will.
8.09.2012
7.21.2012
happy birthday, ben!
Our nephews Ethan and Ben—brothers—both have autism. They are lovable, funny and smart. Today is Ben's twelfth birthday. We sang him Happy Birthday over the phone, then spoke with him one by one.
"Hi Aunt Christy," he said, after my mother-in-law passed me the phone.
"Happy birthday, Ben. Have you had a good day so far?"
"Yes, and tonight we are going out to eat pizza."
I asked him what kind of pie he was going to order then agreed that cheese and pepperoni were a couple of my favorite kinds, too.
"How's Calvin?" he asked, as he never fails to do—as neither of my nephews ever fail to do.
"He's doing pretty good, Ben. It's so nice of you to ask."
"I have an idea," he continued, "Why don't you write a book about Calvin and about epilepsy and sell it in book stores."
"That's what I hope to do, Ben. You had the same idea as I did. That's pretty cool."
And then he added, "Maybe Bowdoin College will buy it."
I smiled and thought to myself, how great would that be.
Happy Birthday, Ben! We love you. And we love you too, Ethan!
"Hi Aunt Christy," he said, after my mother-in-law passed me the phone.
"Happy birthday, Ben. Have you had a good day so far?"
"Yes, and tonight we are going out to eat pizza."
I asked him what kind of pie he was going to order then agreed that cheese and pepperoni were a couple of my favorite kinds, too.
"How's Calvin?" he asked, as he never fails to do—as neither of my nephews ever fail to do.
"He's doing pretty good, Ben. It's so nice of you to ask."
"I have an idea," he continued, "Why don't you write a book about Calvin and about epilepsy and sell it in book stores."
"That's what I hope to do, Ben. You had the same idea as I did. That's pretty cool."
And then he added, "Maybe Bowdoin College will buy it."
I smiled and thought to myself, how great would that be.
Happy Birthday, Ben! We love you. And we love you too, Ethan!
 | |
| Ben, Calvin and Ethan, June 2010, photo by Michael Kolster |
7.03.2012
change the world
Never doubt that a small group of thoughtful, dedicated citizens can
change the world. Indeed, it is the only thing that ever has.
—Margret
Mead
 |
| photo by Valli Zampini |
5.26.2012
pain and inspiration
My brother Scott is a world-class Master’s swimmer. He’s in his early
fifties still swimming times nearly as good—if not better in some
cases—as he did in College. Scott has competed in countless Master’s
Nationals. Over the
years he’s broken a few world records in his age group.
Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.
Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.
At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and sobbing. Scott described the event, my father not having been able to attend. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, all for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.
My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin and with his chronic epilepsy. I only wish I could share that same magnificent influence with my own son ... and with others.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
Originally published 5.2.11.
Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.
Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.
At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and sobbing. Scott described the event, my father not having been able to attend. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, all for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.
My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin and with his chronic epilepsy. I only wish I could share that same magnificent influence with my own son ... and with others.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
Originally published 5.2.11.
 |
| my big brother, and ham, Scott |
5.02.2012
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